Posts - MPN Voice | HealthUnlocked

MPN Voice

10,443 members • 14,393 posts

All posts for November 2021

Pegasys not working as well with Calr

At one of the recent webinars from the US, a haematologist mentioned that interferon doesn't work well with Calr mutation. Can anyone shed any light? Sadly...

At one of the recent webinars from the US, a haematologist mentioned that interf...

•2 years ago

Possible side effects of interferon?

Hi all, I am 34 with ET. I started Pegasys at 45mcg per week about 2 months ago and for the most part I haven’t noticed obvious side effects. However in the...

Hi all, I am 34 with ET. I started Pegasys at 45mcg per week about 2 months ago...

•2 years ago

Silent Migraine

Does anyone one experience this with a mildly elevated Platelets

Does anyone one experience this with a mildly elevated Platelets

•2 years ago

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Ectopic beats

My heart often has runs of bigeminy, with no clear cause. I have ET Jak+ve, with platelets usually around 1200. Another condition (neurofibromatosis) makes...

My heart often has runs of bigeminy, with no clear cause. I have ET Jak+ve, wit...

•2 years ago

Et

diagnosed with et over 2 years ago,platelets very high but now they are normal without any treatment except aspirin,however now my hb is low 10.9 ,any ideas...

diagnosed with et over 2 years ago,platelets very high but now they are normal w...

•2 years ago

Conversations with MPN Specialists- Focus on MF

From our friends at MPN Advocacy and Education International. An upcoming event. Join MPN Advocacy & Education International as they host the next...

From our friends at MPN Advocacy and Education International. An upcoming event...

•2 years ago

Multi-month Antibody treatment results

There is some good news for those who are not getting good antibodies from the vax. These are not yet approved for use this way, but it is encouraging info to...

There is some good news for those who are not getting good antibodies from the v...

•2 years ago

Tiredness and ET

I’ve been on 1000mg of hydroxycarbamide since 2005 with steady platelets around 370 I always suffer with tiredness and headaches does anyone have any tips to...

I’ve been on 1000mg of hydroxycarbamide since 2005 with steady platelets around ...

•2 years ago

Newly diagnosed ET

Hi, I’ve recently been diagnosed with ET and still awaiting treatment (Chemo tablets) for the middle of this month, does anyone have any tips and guidance as...

Hi, I’ve recently been diagnosed with ET and still awaiting treatment (Chemo tab...

•2 years ago

Castle Walt Disney designed the castle he built at Disney Land. This castle welcomes you to the outskirts of the diamond village of Toledo.

My name is Anna, I was officially diagnosed by BMB of a Myeloproliferative Neoplasm, Essential Thrombocytosis in December 2011. I have been aware of the...

My name is Anna, I was officially diagnosed by BMB of a Myeloproliferative Neopl...

•2 years ago

Combo therapy for PV trial

Hi there, Does anyone has treated with this combo Ruxolitinib and Interferon...? Could you share your experince please..?...

Hi there, Does anyone has treated with this combo Ruxolitinib and Interferon......

•2 years ago

Mithridate Trial

This trial is Ruxolitnib versus hydroxycarbamide or interferon as first line therapy in high risk PV. I am 69 female diagnosed ET 2 years ago but diagnosis...

This trial is Ruxolitnib versus hydroxycarbamide or interferon as first line the...

•2 years ago

Peg reaction

Has anyone had a bad reaction to Peg? 45mcg per week?

Has anyone had a bad reaction to Peg? 45mcg per week?

•2 years ago

Stress Reduction Tips?

Hi good people. Does anyone take meds for anxiety/stress? During the past year while attempting to convince my daughter to seek mental health care, my PV has...

Hi good people. Does anyone take meds for anxiety/stress? During the past year...

•2 years ago

Travel insurance companies or brokers for MPN’ers in UK

Hi I am going on holiday to Spain from UK and my insurance broker retired so wondered if anyone knows any good insurance companies or brokers that can do...

Hi I am going on holiday to Spain from UK and my insurance broker retired so won...

•2 years ago

CBD

Please can someone recommend a good quality CBD OIL 10 , organic that will be legal to bring back to UK. SUCH A LOT OF choice and can’t get my usual one...

Please can someone recommend a good quality CBD OIL 10 , organic that will be l...

•2 years ago

Besremi in Prague

The Municipal Court in Prague has ruled that the insurance company is obliged to approve an extraordinary reimbursement for the client's treatment with the...

The Municipal Court in Prague has ruled that the insurance company is obliged to...

•2 years ago

Tingling in arms and legs

Hi, I’ve read that some people with MPNs suffer from tingling in various parts of the body . I was diagnosed with ET earlier this year and am just taking...

Hi, I’ve read that some people with MPNs suffer from tingling in various parts...

•2 years ago

Allele burden 26%

MPL Et just seen BM result which says MPL allele burden 26% not quite sure if this is high or low or not important been offered HU or peg interferon trying to...

MPL Et just seen BM result which says MPL allele burden 26% not quite sure if th...

•2 years ago

HU or Peg as 1st line

I have had ET MPL +ve for 11 years. Have been fairly resistant to starting treatment but after 2nd opinion yesterday conseeded . Have been offered either as...

I have had ET MPL +ve for 11 years. Have been fairly resistant to starting trea...

•2 years ago

I forgot how hard it was

On Friday Stef and I drove to Stratford upon Avon to sign the tenancy agreement on our new 2 bed extra care apartment. The drive there was very pleasant but on...

On Friday Stef and I drove to Stratford upon Avon to sign the tenancy agreement ...

•2 years ago

New to PV and MPN Voice

I was recently diagnosed with PV, August 2021 after a routine blood test several months previously at my Primary Care Doctor. It has been a shock but luckily...

I was recently diagnosed with PV, August 2021 after a routine blood test several...

•2 years ago

Covid Antibodies after 3rd Dose

Hi. Just wanted to share my experience of the antibody tests. I have PV and I am on Hydroxy and Aspirin. I had Pfizer as my covid vaccine (2nd one in...

Hi. Just wanted to share my experience of the antibody tests. I have PV and I ...

•2 years ago

Feeling disheartened and upset

Feeling disheartened and upset after recent appointment- just had a review with specialist haematologist and have come away really tearful. Have been told that...

Feeling disheartened and upset after recent appointment- just had a review with ...

•2 years ago

Thunderclap headaches

Hi, has anyone ever suffered repeated daily thunderclap headaches associated with their ET?

Hi, has anyone ever suffered repeated daily thunderclap headaches associated wit...

•2 years ago

Johnson and Johnson Covid vaccine

Hi, Anyone here took the johnson and johnson vaccine? I took mine in early April and in view of the blood clot in several recipients, I wonder if I should take...

Hi, Anyone here took the johnson and johnson vaccine? I took mine in early April...

•2 years ago

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